Tic Disorders and Tourette’s Syndrome Awareness

This is new territory for us, well I thought so until we had our referral back to the hospital.  When we finally had our first video call appointment in this new look COVID-19 world of ours, the Dr quickly referred to previous notes and documents about me raising “tics” historically.  He had not seen Cameron since he was 8 and now 12 in his new high school setting the Dr said he was not surprised to see us referred back.

So up until late July there wasn’t any obvious concern, we were doing our daily home-schooling whilst I was juggling working from home and all was ok and normal, well as it could be.  We then went away for a staycation to Cornwall and whilst in close quarters of a caravan and no WIFI; which meant we spent a lot of family time together, started to notice that Cameron was doing like a head jolt -  a flicker of the neck and a grimace of the jaw.

It was a couple of days into the holiday and my husband noticed and asked me had I also picked up on this new activity.  I had but we reassured each other that it was probably just the new setting, coming away from home after being cooped up since March.  Any excuse really that would try and out that anxiousness at bay, whilst I then couldn’t sleep and turned to Google for answers – yes, I know, we all know this is the worst thing to do.

I was suddenly convinced that Cameron had some form or early onset Tourette’s.

I mean for years he use to have “vocal” tics in the style of train horns; yep you read that right, a train horn for every occasion weather he be worried or excited – he had a train horn noise for just that.  Fast-forward to the Drs appointment and was reminded of this by the Dr, you see I don’t remember when that actually stopped.  Just when we though that was it and this noise was here to stay – it would change, as many things with ASD.

So the Dr is telling me that Cameron has what appears to be a Tic Disorder.

Now Google tells me: Tic Disorders are defined in the diagnostic and statistical manual of mental disorders (DSM) based on type (motor or phonic) and also the duration of the tics (sudden, rapid, nonrhythmic movements).

The Dr proceeded to explain that Tourettes is more well known, but because of the severity of people we see on TV that are at the extreme end of the scale and involuntary swear.  That’s like ASD though, Tourette’s is also a scaled spectrum and basically its Tourette’s when people have a combination of both the motor and vocal tics.  That these have started well before the age of 18; typically, between 4 & 6, that they increase in severity between and not limited to 10 & 12 and then hopefully decrease during adolescence in most cases.

The Dr reassured us that this is a worrying time and the last six months stress will not have helped matters; that anxiety, stress and adrenaline contribute to the daily management of tics but was also honest in that this is likely to get worse for us before it gets better.  That in fact the tics should reach their peak during the last year of high school around GCSE time and we may have to consider a short-term medical management depending in how Cameron is coping.

Our road has not been plain sailing, and this is just another obstacle.  Cameron is now armed with the knowledge of what is happening to him, how he can explain these things to people who ask and how to calm himself so that they can ease.  Knowledge always gives us power and allows us to be in control.